When Savannah Robinson comes along to her mother’s doctor appointments, she is usually the one who does the talking.
“They ask her questions and she speaks for me,” said Georgetown resident Jamie Robinson, Savannah’s mother. “She’s become so mature, and she’s like a little advocate.”
Seventeen-year-old Savannah grew up well accustomed to medical talk. Ever since she can remember, she has been a support system for Jamie, who has dealt with lupus since her own childhood.
“She’s my hero, and I’ve watched her fight it since I was little,” Savannah said.
Both Jamie’s and Savannah’s experiences inspired the teen to organize the Inaugural Champ’s Ball at the Muhammad Ali Center Wednesday at 5 p.m. to raise both money for and awareness of lupus.
The ball’s theme is “a night to float like a butterfly for a disease that stings like a bee,” inspired by the butterfly-shaped facial rash characteristic of lupus and for the fight against the disease, and which is a play on one of Muhammad Ali’s phrases.
The event will feature cocktails, a live musical performance by The Monarchs, an award ceremony and the release of butterflies from the center’s balcony if weather permits.
Savannah said the event, which also partners with the Alliance for Lupus Research, has been a year and a half in the making.
“I really wanted to make more of a difference and kind of get more awareness out in the community,” she said of the disease that affects 1.5 million Americans.
Lupus is an autoimmune disease that causes the body to attack its own healthy cells and tissues. Savannah said it’s difficult to diagnose — It has no cause or cure and often mimics other diseases.
“It’s a very strange disease,” Savannah said.
It’s also not talked about very often.
“What I’ve learned throughout this whole entire process is although there’s not much known on the disease, when you ask around and you start talking around the community, most people have somebody that they know that had lupus,” Savannah said.
For the Robinsons, a diagnosis came later in life.
Jamie said she began seeking answers when her daughter was about 2 or 3 years old.
“When I first got sick, they didn’t know what was wrong with me,” she said.
Jamie spent about four or five years traveling to various doctors in various cities, until one of her rheumatologists finally labeled her illness as lupus.
“It’s kind of a closet disease,” she said.
Common lupus symptoms include fevers, joint pain, tiredness or weakness, headaches and rashes.
In the earlier years, Jamie said it was hard to take care of her illness and her child.
“It was scary because there were times I didn’t know if I was going to be there the next day,” Jamie said. “There were times when I couldn’t even function. It was affecting me a lot.”
Now, Jamie takes about 11 medications daily for “maintenance” — lupus affects every organ of the body.
Savannah said that growing up with a parent with lupus was difficult at times.
“In some ways I guess you have to deal as a child with the fact that your mom might not be able to do the things that a normal parent might be able to,” she said.
Both Jamie and Savannah have discovered over the years that lupus is much more common than they believed.
“You think you’re alone,” Jamie said, when she first learned of her diagnosis.
Savannah’s Facebook page called “My Mom Has Lupus” has connected the Robinsons with over 1,000 others whose lives have somehow been affected by the disease, many who also believed lupus was rarer than it is.
“They all seem to have a variable of the same story,” she said.
While research and donations are important to Savannah, she said another goal of the Champ’s Ball is to further unite those fighting the disease.
“I kind of want to tie lupus patients more together and kind of [create] closer knit communities for lupus patients around the country,” she said.
For more information, visit thechampsball.org. Remaining tickets are limited.